Characteristics of historically underserved populations. Graphic from Compassion & Choices
The Illinois End-of-Life Options for Terminally Ill Patients Act (SB3499), which would authorize medical aid in dying in Illinois, was introduced in the Illinois Senate on February 9, 2024 by Assistant Majority Leader Linda Holmes (D-Aurora). None of the bill’s co-sponsors are from central Illinois. This article contains information about the bill and other end-of-life resources, drawn from the Compassion & Choices website. Readers are encouraged to contact their legislators and affinity groups about supporting this effort.
In brief, this medical-aid-in-dying legislation would allow a mentally capable, terminally ill adult with a prognosis of six months or less to live the option to obtain a prescription medication they may take so they can die peacefully and end their suffering.
The national organization that has been working on this issue is Compassion & Choices Action Network. Medical aid in dying (MAID) is only offered to terminally ill patients when two medical doctors agree that a patient has less than six months to live and determine that a mental health issue is not motivating the person to seek MAID medication. MAID is differentiated from euthanasia because the terminally ill adult takes the medication themselves. There are other safeguards to block coercive misuse. Physician involvement includes discussing options with the patient, evaluating their competency and whether they meet criteria to access this option, reminding them they can always change their mind, and writing the prescription.
Ten states and the District of Columbia have enacted similar legislation in the last 25 years. Eighteen states are considering it. There have been no reported instances of misuse of this type of medical care in any of the states that have authorized MAID legislation. Interestingly, in those states where medical aid in dying is legal, about one-third of people who have received the medication have chosen not to take it. They find that having it on hand alleviates some of the anxiety of a terminal diagnosis.
I have been a caregiver to someone who received this prognosis and who would not have chosen medical aid in dying. Grandpa Bob’s family is confident he would have. If this bill passes, it will be possible for people to make either of those decisions.
People’s values surrounding medical care may differ, but terminally ill adults should be allowed to explore all possibilities regarding this most personal of decisions with their loved ones, their doctors, and their faith or spiritual leaders, if they have them.
SB3499 also states that participating physicians will provide information about “comfort care, hospice care, and pain control as well as the foreseeable risks and benefits of each, so that the patient can make a voluntary and affirmative decision about their end-of-life care.”
A few of the safeguards against misuse included in the bill are the need for two medical doctors to agree that a patient has less than six months to live, is not under duress, is mentally competent, and is able to self-administer the medication. Age and disability are explicitly prohibited as qualifying factors. Doctors can decline to participate, and they can also require a separate evaluation by a mental health professional if they have concerns about a particular person’s state of mind.
Most of all, terminally ill patients will be trusted to make a choice that suits their values while retaining autonomy in deciding to change their mind at any point. Other aspects of the legislation are:
- Patients need to make both verbal and written requests for the medication.
- The written request has to be signed by two witnesses, and at least one witness cannot be a relative, stand to benefit from the person’s estate, or be an operator of a health care facility where the patient is being treated.
- Unused medication must be properly disposed of according to existing US Drug Enforcement Agency guidelines.
While a majority of Illinois doctors support making this option available, no one will be required to provide prescriptions. And the Illinois State Medical Society’s 2023 position statement emphasizes this: “should medical aid in dying become legal in Illinois, the ISMS will educate its members about the law and advocate for physicians who choose to participate as well as those who opt out.”
Some of the other issues that Compassion & Choices advocates for are briefly described below.
Advance Care Planning
Compassion & Choices helps people and providers initiate open, honest conversations, memorialize their wishes in advance directives, and become strong advocates for themselves and their loved ones while at the same time advancing federal policy solutions to improve the enforceability and access to advance directives. Advance care planning is the process of planning for future medical care in the event that the patient is unable to make their own decisions.
Health Care Equity at the End of Life
Compassion & Choices partners with racially and ethnically diverse communities, LGBTQ+ communities, and those with disabilities to address inequities in laws and health care systems; and by providing those community members with information that empowers them to have a death consistent with their values and priorities.
Dementia End-of-life Care
Compassion & Choices works to ensure that people are aware, empowered, and supported in getting the care they want—or not getting the care they do not want—should dementia take hold. Dementia is not considered a terminal disease, and people are often hospitalized and given aggressive medical interventions to sustain their life even when there is no benefit to that treatment or chance for recovering a full, autonomous life. Standard advance directives do not address the complex and unique issues that arise with advanced dementia, so Compassion & Choices developed a tool in English and Spanish to add to this document so that people with dementia can get the care they want—and avoid the care they do not want.
National Emergency and Palliative Medicine Initiative
Compassion & Choices strives to transform care by advancing and promoting the integration of palliative care into emergency settings. The expert and rapid care provided in emergency departments can be what many people who visit need; for some, it can even be life-saving. This initiative is working with doctors on improving patient-centered care for people with life-threatening and life-limiting illness. However, for adults living with serious and terminal health conditions, aggressive treatment and invasive interventions may not be beneficial or what they want.
More information about these topics and more are available here. Resources include free downloads of decision-making documents containing checklists of questions that can be shared with family members, caregivers, and physicians.
I hope that anyone who agrees that end-of-life options are an important aspect of medical treatment will take a moment to let their elected representatives know. SB3499 makes it possible for terminally ill people to advocate for their own desires at this critical time in their lives. I also encourage readers to establish end-of-life care plans and review them with the people in their lives who will be empowered to act on their behalf, if needed.
Meg Miner is a retired librarian who has lived in central Illinois for 25 years. She was inspired to join Compassion & Choices in 2008, when the end-of-life wishes of local activist Robert “Grandpa Bob” Wahlfeldt were not honored by his health-care providers. Bob would have benefited from options like the ones described below, but most were not available.
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